Oct 9, 2026 · Comments ↓

Same label, different needs: what a diagnosis doesn't tell you

Cream paper, blue paper, and ten minutes at Rheumatology. What a diagnosis doesn't tell you about someone's needs, and why we should ask instead.

When I was delivering training face to face, one person with dyslexia asked for their handouts on cream paper rather than white. I made a note and thought, right, that’s what people with dyslexia need.

The next time someone told me they had dyslexia, I asked if they’d like their handouts on cream paper. “No,” they said. “I prefer mine on blue.”

Then it was font size, and the font itself. So I stopped guessing from the label and started asking everyone what worked for them.

The dyslexia gave me a starting point. That’s all it gave me.

The new review says it too

On 9 October the government published the final report of its independent review into mental health conditions, ADHD and autism. It runs to nearly 600 pages, and two lines in it say what those handouts taught me.

“Diagnosis can help explain difficulties and guide treatment, but it does not determine work capacity or specify which adjustment will help a particular person in a particular role.”

And from its summary: “distress is not disorder; diagnosis is not need; and support is broader than treatment.”

The review wants to move from a “diagnosis-dependent” system to a “needs-led plus diagnosis” one. Good. What I see now is people assuming everyone with the same diagnosis needs the same thing. Leading with the diagnosis creates those assumptions. It needs to be needs-led first, with the diagnosis sitting behind it.

Ten labels, and a diagnosis that took twelve years

I’ve written before about being given ten diagnostic labels over a lifetime of poor mental health. None of them has done anything for me.

Around 2008 I started having physical health problems. It took twelve years to get a diagnosis. I couldn’t get a GP to run an autoimmune test, and in the end I found it through a private blood test I paid for myself. Along the way I was given something called “Widespread Chronic Pain Syndrome”, and then a possible fibromyalgia, neither of them properly discussed or confirmed.

There’s a name for this: diagnostic overshadowing. Once you have a mental health diagnosis, new symptoms get read as part of it. The review was writing about mental health and neurodevelopmental conditions rather than physical illness, but one of its lines puts my twelve years into words: “Once one diagnosis has been established, subsequent difficulties may be interpreted primarily through that existing framework.”

The right diagnosis still closes the conversation down

I now have three autoimmune diseases, the main one being Sjögren’s. You’d think the right diagnosis would open things up. If anything, it closes everything down.

My Rheumatology appointments last about ten minutes, and dryness is the focus. Dry mouth, dry eyes. What doesn’t come up:

exhaustion
permanent one-sided headache
chronic cough, especially at night
TMJ (jaw joint problems)
brain fog
chronic pain
sleep problems
gut and digestion problems
dysautonomia
small fibre neuropathy
lightheadedness
Raynaud’s
loss of feeling in my fingertips
facial sensitivity
itchiness
my mental health

And probably a lot more I can’t remember.

It’s the dyslexia handouts again, with far more at stake. The label decides what gets asked about, and everything else goes unheard. Mental health or physical, the diagnosis means the important conversations don’t happen.

What a needs assessment could look like

An occupational therapist could start with a simple questionnaire to get the ball rolling. It wouldn’t need to be the consultant, but it could inform the consultant and lead to better conversations when review appointments do come up.

I’ve never been offered one. Imagine having an appointment with an occupational therapist!

If you manage people

The same goes at work. When someone tells you their diagnosis, it’s tempting to do what I did with the cream paper: look up what people with that diagnosis need, and hand it over.

The review is clear that a diagnosis doesn’t specify “which adjustment will help a particular person in a particular role.” It also says adjustments “can be effective when they are provided”. Yet “workers with mental health conditions and related impairments remain less likely to receive workplace accommodations than those with physical or pain-related conditions.”

And it says this: “People should not have to disclose intimate personal histories simply to obtain practical support.” You don’t need the diagnosis. You need to know what gets in the way, and what would help.

That’s the workplace version of my questionnaire. Before the review meeting or the return-to-work chat, ask the person what’s getting in the way and what helps. Then have the conversation properly.

Ask first. I’d never have known about the blue paper otherwise.

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